This Giving Season:Please Donate to the UMDF

As you probably know, I work at Caring.com, a website devoted to
caregivers of the sick and elderly. Caregiving is an issue that is near to my heart because
my father was diagnosed with an extremely rare, terminal condition in 1992, when I was a
sophomore in high school. His condition is so rare, only his family is known to have the
exact form of it, but it is part of a class of diseases called Mitochondrial Disorders.

Mitochondria are the power plants of the cell and they are pretty cool little guys.
Evolutionarily, mitochondria used to be their own organism, but a long time ago, they merged
with one of our primordial ancestors and formed a symbiotic cellular relationship. They have
their own DNA called mDNA and in my Dad, that DNA is broken. This breakage prevents him from
converting ATP (cellular fuel) all the way into energy. This means that simple tasks that
you and I take for granted like walking a quarter mile are near impossible. Organs, the brain,
and the nervous system do not generally like running low on energy. Strange symptoms like
uncontrollable movements, cramps, seizures, and vertigo can occur without warning. On top of
all that, the disease has given him diabetes and he’s 100% insulin dependent.

At the time of his diagnosis my father was given two years to survive. Our family mentally
prepared itself for the inevitable, but my father refused to give up. He researched his
own disease and started experimenting with his diet, medicines, and food supplements. Finding
things that helped and iterating methodically and scientifically. After a few years, he
found a combination of diet, medicine, and supplements that have slowed the progression
to a crawl. My father is disabled, but his quality of life is pretty good for someone who
is supposed to have been in the grave for 16 years now. We consider ourselves very fortunate
to still have him in our lives. I am very proud of him – it is his pure dedication and
relentless will to survive that keeps him with us. I don’t know about you, but I don’t
think I could eat virtually the same diet for a decade and still be sane.

(At this point, you might be wondering if I am risk to get this same disease. I appreciate
your concern, but fortunately for me, this disease can only be passed from mother to child
because sperm do not have mitochondria.)

But this is about as “happy” a story of mitochondrial disease as you’ll ever hear. For
most, the onset of mitochondrial disease occurs at a very young age. These young children
don’t understand why they can’t go outside and run around with their friends. Their parents
have to hold them while they have seizures. And most die before they ever reach puberty.
Mothers are left to outlive their children and to deal with the immense sense of loss and
guilt of having passed on this condition to their children and wondering if and when they
might themselves become symptomatic.

About 1 in 4,000 children in the United States will develop mitochondrial disease by the
age of 10 years. Up to 4,000 children per year in the US are born with a type of
mitochondrial disease.
Like most rare diseases, pharmaceutical companies do not pursue cures
because the small number of people with the disease makes it not worth their while. So the
United Mitochondrial Disease Foundation (UMDF), a non-profit, was founded with the
goal of providing support and research grants to scientists who are working on finding a cure
or treatments.

So I have decided to make Compass “Charityware”. Charityware is free software
with a mission. If you use this software and it makes you more productive, increases your
company’s bottom line, or nets your more take home per gig, then I ask that you would
please make a Tax Deductible donation on behalf of Compass to the UMDF.
It only takes a few minutes of your time and the money you donate will make a difference.
If your business uses Compass, please see if they will donate or perhaps they might have a
matching program during the holiday season for charitable giving.

Over the next few months, I will be working hard to get compass to version 1.0 and for
over two years now I have been tirelessly to make stylesheets suck less. I have given
many of you a level of personal support that most project maintainers do not provide. All
free of charge. It would give me great pride if you all of you would do something that I
cannot: Collectively give a sum of money to the UMDF that would far exceed my own
ability to donate to them directly. I estimate that there are 10,000 to 20,000 users of
compass. If each user gave $50, we could raise a $1 million. Will you do your part?

About Me

I am an open source hacker and stylesheet architect at LinkedIn.
I live in San Jose, California with my wife and daughter.

Open Source

I'm the creator of Compass, a stylesheet authoring framework
and I'm on the core team of
Sass — the stylesheet syntax upon which Compass is built.
I maintain about a dozen less well known ruby libraries and rails plugins on
github,
and am an active contributor of patches to the many open source projects that I use.